It sounds like your dad needs the help of a physical therapist, which his doctor can help you find. A good physical therapist can teach you and your dad's other caregivers exercises to improve his range of motion. She can also recommend local therapies such as injection of botulinum toxin or the use of analgesic cream.

If your dad's pain is unbearable and doesn't respond to exercise and local therapies, oral pain medication or muscle relaxants may be necessary.

As a family member and caregiver, you can help by being vigilant about limb contractures. Try to get your dad's leg and arm moving regularly -- but stop if there's pain, swelling, or contractures. If any of these occur, check with your dad's doctor about how to proceed.

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I too have chronic pain since my stroke. They have told me I have Thalamic Pain Syndrome. Nothing so far has worked and I am not ready for narcotics, I do not want to get addicted. Therapy has had no success.

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For 20 years I have tried to find a solution to my post stroke pain. For years I was under the impression that it was Thalamic Pain Syndrome, but last year an endocrinologist said that the thalmus was not involved with my pain. These years of searching, I was 54 at the time of my stroke, have provided a lot of learning about my body and my psycological (sic) makeup. But unfortunately no answer as to where the pain is coming from or what will relieve it. I cope by keeping as busy as I can, I have mobility problems and my left arm and hand are useless. More importantly I keep my mind busy and active. Fortunately my memory is intact and my thinking facilities are clear. Word puzzles and conversation with others tend to keep the mind alert.

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My stroke 1/1/2008 gifted me drop foot and a loss of hearing in one ear with a reduction of strength on my right side top to bottom. Since my foot has a mind of its own I realy have to keep it on the straight and narrow. Many rehabists just are a controlled enviornment that some need.Some don't Some regain their control and strength through their own discipline as in my case. YOUR INPUT WAS HELPFUL. THANK YOU!

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IT WOULD BE HELPFUL TO HEAR A DESCRIPTION OF THE VARIOUS PAINS YOU MENTIONED. AS DR CASTLE MENTIONED. IF ITS MUSCLE OR SPASTICITY PAIN THEN ITS A MUST TO GET PT WORKING ON THE PROBLEM. IF ITS THALAMIC PAIN/CENTRAL PAIN SYNDROME ITS A WHOLE OTHER BALL GAME. HERE IS THE CURRENT DEFINITION USED BY OUR GROUP. BY THE WAY.... THE THALAMUS DOES NOT AWLAYS HAVE TO BE THE DAMAGED AREA. BUT YES, IN MOST CASES WITH STROKE IT IS.
REMEMBER YOU ARE NOT ALONE IN THIS STROKE AFFECT. THERE ARE PEOPLE WHO UNDERSTAND.

HUGS
MARY

http://www.centralpain.org

http://health.groups.yahoo.com/group/CPS_ALLIANCE/

CENTRAL PAIN SYNDROME
A DEFINITION

A neuropathic pain with various names.....In an effort to get everyone on
the same page term we use is
Central Pain Syndrome
We will often use "CPS" for short.

24/7 Sensations can affect us all differently, in different places on our
bodies, and at different levels of pain and suffering.

Extremely difficult to diagnose.
Often sending the patient to many doctors to find one that believes in
their suffering.
Finding a doctor who is willing to treat and work to find relief for the
person that suffers with this savage pain becomes a miracle in the mind of
those that suffer.

Causes:
Central pain syndrome occurs because of injury to central nervous system...
CPS can be caused by stroke, multiple sclerosis, epilepsy, Parkinson´s
disease, toxins, tumors and trauma to brain or spinal cord, any diseases that
eventually reach the central nervous system.

Sensations:
It can be a steady, sometimes deep burning, aching, cutting, tearing,
pressing, lacerating mixture of pain sensation.
Pain may be moderate to severe in intensity.

CPS may be described
as weird sensations like Burning: "A chemical, not a purely physical burn"
, "bone cold", "wet" sensations, tingling, a "pins and needles", a "
ballooning" sensation, throbbing, the feeling of a dental probe on a raw nerve,
even metallic.

Intense skin reactions
can accompany these symptoms, such as burning, stretching, tightness,
itching, or a crawling feeling.
CPS can be aggravated by any light touch such as the feel of cloth on skin
making dressing an ordeal, as can the touch of a sheet or blanket.
The touch of a loved one, may overwhelm the brain with the pain from CPS.

Intestinal reactions
Gut pain, stomach nausea and vomiting can be a part of CPS.

Numbness
The hands, feet, head, and trunk can be affected with a numbness that is
painful, and does not offer any relief, only adding to the pain.

Onset
CPS can begin from day one of the stroke/injury or can take months, even
years to make it's appearance. Central Pain Syndrome can be a life
threatening condition:
It can often cause depression, anxiety, anger, frustration and
hopelessness..
When a person rates the pain as a 9 or 10 on a pain scale, and there seems
to be no relief in sight, with no hope or understanding or support from
family and professionals, they may even come to feel that suicide is the only
way out.

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My partner just had a stroke and he was told he had CPS as well and was given medication to help the pain and thank goodness it really helps him until we find out what caused his stroke. They are doing an MRI next week and that should shed more light on the cause. His pain was so great that he could not do anything but hold his head. He was having sharpe pain in the head, constantly. They prescribed other meds but they did not help until they gave him a low dose of morphine. I think 15mg until he gets the MRI done. He seems so much better now, he can eat and talk and sleep ok. Very big difference now that he can control the pain. Barbaramae

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HI, NOT ALL CPS COMES FROM THE THALAMUS AREA. IT IS VERY RARE BUT CAN BE FROM DAMAGES TO OTHER AREAS OF THE BRAIN. REMEMBER WE AT CPSA ARE HERE FOR YOU IF YOU WANT TO BE IN A GROUP OF PEOPLE WHO UNDERSTAND WHAT YOU ARE GOING THROUGH AND MIGHT GIVE YOU IDEAS THAT NO ONE HAS TOLD YOU.

ALSO.... UP TO 20% OF STROKES CAN END UP WITH CPS AS A LONG LASTING AFFECT.

AS FOR FINDING THE "CPS" DX. 5% ARE TOLD THEY HAVE CPS, 5% FIND OUT IN THEIR RESEARCH THAT THIS FITS THEM, AND 5% NEVER KNOW WHY THIS IS GOING ON IN THEIR LIFE. SO SPREAD THE WORD IF YOU RUN ACROSS A STROKEE WHO NEEDS ANSWERS.
AND BE GRATEFUL YOU HAVE A TERM AND KNOW WHERE TO SEEK ANSWERS.
HANG IN THERE
YOU ARE NOT ALONE.
HUGS
MARY

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TIA reasons to be early sign that stroke is on its way. TIA can serve as WARNING SIGN for the approaching danger of disaster to the brain. It is time to use the brain to prevent the stroke. TIA is called "little stroke", because little chunks of clott are breaking off from a big clott stuck somewhere down the "river". The stroke will be prevented by finding the source of the little flying chunks. Alcohol is the worst because it dissolves the big clott which can suddenly disloge and causing stroke. Alcohol causes the brain cells to be in a drunkin stupar. Drunk brain cells can not think. "From little things big things will one day come."
It is wise/sincere/respecful/caring/humble/peaceful/thankful to recognise and seek help from that who created the brain.

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TO Barbaramae. I AM SO GLAD THEY GOT AT HIS HEAD PAIN AND FOUND SOMETHING TO GIVE HIM SOME RELIEF.
BUT I MIGHT ASK WHY THEY ARE TAKING SO LONG TO GET MRI VIEW OF WHAT IS HAPPENENING? HE COULD BE HAVING THE PRE PAIN OF A HUGE STROKE. . HEAD PAIN IS FAIRLY RARE IN CENTRAL PAIN.... AND HAVING THAT MUCH HEAD PAIN SO EARLY ON WOULD SCARE ME BEYOND WORDS. DO UP DATE US AS YOU FIND OUT WHAT THEY FIND OUT. ANDHE IS IN MY PRAYERS THAT NOTHING BIGGER AND WORSE IS GOING ON THEN CENTRAL PAIN.

THANKS FOR LOOKING OUT FOR HIM.
HUGS
MARY

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I recently visited my aunt, she had a stroke couple weeks ago and her right side is disabled, she had so much pain in the affected arm and leg that she would cry a lot! I brought her wood lock medicated oil and she is using it since! Miraculously her pain is totally gone, i taught to post this so it can help someone as well, even one of the therapists couldn't believe it she took the name to search it online for her mom!
you can buy it on www.ebay.com , its yellow box with Chinese head printed in the front Wong to Yick, thanks

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Hi
I found that my father was actually having tactile hallucinatins and the only way I could stop his pain was by using haloperidol. He takes .5 at night and .5 in the morning. Unfortunately the only way I discovered this was when he was treated for final stage vascular dementia caused by his first stroke, the major haemorrhage in the occipital lobe. He is now in a nursing home but is pain free at the moment from the dreadful pain in his leg. Hope this may put someone on a path to researching 'tactile hallucinations' which are caused by the damaged brain part of the stroke. Regards Sandra

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I have terrible post stroke pain ...those first two hours in the morning are like torture until meds start working... at 57 i Must have hydro 5mg ,..2 in the morning when waking up and 3 more thru the day.. its the only relief ive gotten.. tried gaba__ and a couple of others and they made me feel sleepy and odd.. Stroke was feb 2013 and paralyzed the right side.. the pain didnt start for a month and it then hit hard and has not stopped since.. So narcotics are a Must for some folks.. it has been able to allow me to work p/t and run my small household ..must slower and more clumsy & i didnt want to think govt help/disability.. At my age i am Not worried about addiction just Quick pain relief.. i will tamp down the meds when/if this terrible hip, shoulder, leg pain lessens.. 25mg of hydro is not as much as some folks take per day i dont think... I would function even better i think if Dr. would allow 35-40mg.. but i know Dr's are timid/scared to give meds that Work for my type of stroke/pain/issues.

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My father had terrible muscle pains after his stroke (major haemorrhage) which were never controlled. He eventually got vascular dementia and died in a nursing home in a terribly confused state. I have collected all his old MRI and CT scan results and believe he was not having post stroke pain but seizures. These seizures were hard to control and in the end the only thing that helped was olanzapine and haloperidol the anti-psychotic drugs. All these seizures were scarring his brain and stopping the blood flowing round his brain. One doctor said that the pain was a 'tactile hallucination'. I don't know if he was right or not but really the only thing that worked on that pain was the haloperidol. My advice is keep asking for neurologists, MRI's and get second and third opinions. Hope this helps. Many kind thoughts Sandra

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I am just updating my previous online contribution with a website which states that haloperidol and olanzipane are medications to use after a stroke.
http://www.emedicinehealth.com/stroke_rehabilitation-health/page5_em.htm
I just wanted to reply to the other persons's online contribution whose pain comes in the morning for 2 hours and not immediately after the stroke. This is exactly the same as my father. My father went to a rehabilitation centre for 6 weeks after his stroke (Which happened in Nov 2009) and he participated fully in all therapies. Then suddenly he began getting these sensations, pins and needles, then serious pain in his stroke affected leg. Eventually these pains came each morning around 5am, shocking muscular pains in his stroke affected leg, and they subsided completely around 7am. My father was really well after his major haemorrhage in 2009, working in his shed making craft objects, reading, walking around the shops on his walker, etc. Then these morning pains came and he slowly deteriorated. I read all the information sheets to these drugs and they don't sound good, but the alternative was vascular dementia for my father, so I suppose you have to weight up the risks. Until dad died he never got another pain in his leg after starting this medication (specifically the haloperidol). We did take dad to a chiropractor after a severe attack because it was knotting his leg with cramps. The chiropractor said there was nothing he could do to prevent them because it was all coming from his brain but he had no suggestions only to see a neurologist. Dad tried lamatrigine which seemed to make it worse, and pregabeline which did not work either. We took dad to a neurologist who put him on tegretol which did not work. The neurologist basically said 'take that or don't come back' he had no other suggestions. It didn't work so dad stopped taking it and he wasn't brave enough to keep running for second and third opinions, and off course by then the pains had made his leg so bad he could barely walk and we had to travel a long distance to a neurologist. However dad's vascular dementia occurred overnight, which is when they decided to give him olanzapine and haloperidol, but it didn't help is vascular dementia but it did stop his leg pains. One day he was fine and then he woke up and didn't know where he was or where he lived. He had forgotten lots. We had no time to get him anywhere then. Dad only passed away about 3 weeks ago and all the information is fresh in my mind. I hope his experience may help someone to avoid some pain. Any extra information to mine is welcomed as I am interested in other people's experiences with pain from stroke. Kind regards Sandra

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I had the stoke almost 4 years ago, and it wasn't until about 4 or 5 months ago that the intense pain began. I still have mobility on my right side, but at times my shoulder and arm would get 'tight' and uncomfortable. The past few months I have had times of really intense pain, especially in my hip and leg - so harsh it makes me cry. When I flew to see my daughter I thought I was going to die in the plane. When we leveled off at the high altitude, the pain was horrific. As we descended in altitude the pain lessened.
It's very hard for people to understand unless they have been through this, and it helps to know that it's not 'just me' - others experience the same.

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I had a Thalamic Stroke in 2009 which affected my right side. The post-stroke pain has continued, and has intensified. And almost worse - the numbness and feeling of paralysis in the face and extremities - is unbearable at times. Doctors have prescribed high doses of Neurontin, combined with a variety of other meds - all with little effect. More recently, my pain has been controlled somewhat with Lyrica but I don't like the side effects - including forgetfulness. I went through a number of years of physical therapy and occupational therapy but there is truly not much help for the debilitating "numbness" (I wish there were a better, more descriptive word) because that is the worst part for me.

It's wierd that comfort can come from knowing we're not alone in this - but hopefully someday, the nerves that stopped working for us will be fixable.

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